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Desperate for support - 3rd week in


Shadowplay
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Hi everyone out there,

 

I've been reading on this forum for the last week daily more or less. I think that I've probably have read the most threads already, which have given me both hope and pain at the same time.

It's a very serous diagnosis and there seems to be very litte help for this curse of agony that is upon us.

 

To make a long history short: It started out with a massive increase of floaters in both eyes after taking crystalized MDMA. I had a great night but the coming days were obviously very hard to deal with. I thought that it could be something related to HPPD but wasn't sure at all as my opthamologist said that I had gotten myself a Posterious Vitreous Detachment (PVD). This was very confusing as I'm only 23 years old. Except for this I didn't notice any other symptoms, except for BFEP (Blue Field Entoptic Phenomena) which can be a quite normal event while watching a blue sky.

 

1 month later, dealing with a minor depression because seeing hundreds of black floaters everywhere I turn, I went to a festival in Portugal to take some time off and have some fun. Having some fun obviously includes drugs to some part and I remember myself thinking, after a 6-pack of beers and a line of coke, buying that blotter of LSD that: "Fuck it if I get more floaters, I'm still gonna do a vitrectomy for it anyways!".

The brain isn't very intelligient on these drugs I would say. Stupid me.

 

Luckily (oh the irony) I shared the blotter with a friend of mine. The trip was very strong for me, morphing heads, OEVs, strong CEVs with loads of fractals. But for my friend, it wasn't that intense.

It's quite strange because we actually had a fun time tripping, it was very intense and of course a lot of interactions because it was at a festival but it was definitely not a bad trip by any means.

The day after I felt a bit dizzy and my friend was feeling sick. I continued to drink and did a few lines this night, but eventually got very tired and sick and went back to the car to sleep. During my sleep I think I got some kind of flashback, as I remember that I did experience CEV's and did not feel that great at all. And since that day afterwards, everything has basicly been a mess until today.

 

I got some Ativan from a doctor and she said that these were very mild tranquilizers. I've now realized that they're quite strong and has used 1/4 mg every morning to be able to socialize and to see more doctors for examinations. It do feel very helpless though, as I know more about my symptoms and diagnosis then the doctors do, but I won't drop that it is a drug-induced disorder as this will lead to ignorance of my health.

 

My symptoms of HPPD are:

 

- Extreme light sensitivity (I can't go outside without glasses on a sunny day)

- Floaters (I have over hundreds of dark floaters, basicly all the time on every surface.)

- Lack of depth perception (but it's getting better.)

- Halos/Starbursts

- Palinopsia (Most annoying thing, wherever I move my hands, a quick after-image will follow, and this is killing me.)

- Tinnitus (with extreme sound-sensitivity.)

- Visual Snow (also having light sparks CEVs)

- Anxiety with a touch of DP/DR.

- Tension headaches

- Blue Field Entoptic Phenomena

 

I obviously feel depressed by this as well. Right now, it was over 48 hours since I took any Ativan and I don't feel any anxiety, nor can I cry or panic, I feel very numb. I don't have any tension headaches in the back or on top of my head anymore either. The visual snow was lessened yesterday night so I could sleep, but the palinopsia is getting worse. I'm not sure if this is related to the benzodiazepine or if these symptoms actually has been reduced/increased. The DP/DR is also lessened. But I think that this has something to do with the Ativan, but 0,25 mg surely shouldn't last over 48 hours now should it?

 

Except for Ativan, I've been eating these supplements for 1 week:

- B12, Nyacin

- Magnesium

- Lutein/Zeaxanthin

 

Got another eye exam tomorrow, where the doctor dilates the pupil, so I can't even see straight. This is a very anxious process and yet so meaningless. I will ask her if she can transfer me to a neurologist for a QEEG-scan to be able to proceed with this in some kind of way.

 

Medications that I would like to try:

Keppra

Sinemet

Lamotrigin

Clonazepam (Afraid of this one though, as Ativan makes me feel normal again and that I can sleep, so I don't want to get addicted).

 

At this point I do often have thoughts about giving up life, because nothing really matters in this kind of state. I have a great supportive family (had to move back to my parents) and a girlfriend but it feels like that I'm just a heavy stone® on their shoulders. And I do owe them so much in life that I now can't give back. There's a lot of guilt in the picture as I'm sure you all feel or felt at some point.

 

I'm thinking of giving this a year, then eventually going for the rope of there's no improvement.

 

Another thing as I mentioned before that I planned to do was to do a FOV (Floaters Only Vitrectomy). This would atleast eliminate one of my problem and there has been reports that it also can relieve halos and starbursts. Atleast it does clear the vitreous and removes the the dirt that our brain doesn't filter out properly. Has anyone here thought of doing a FOV? It's quite expensive, roughly 4000 euros for an eye, and I don't have the money right now either, thinking of taking a loan for it.

 

I also tend to often over-analyze and over-think the most situations in life (slight of OCD I suppose), which is making it really hard to not think about my HPPD for every second that I'm awake. Everything just feels really pointless and I'm not sure what I should do to make time go by, to hope that it'll get better because like this I'm quite useless for anyone and if I don't enjoy life as it is. Then I question myself if I should live it or not.

 

I know a lot of young people, where few was quite close to me, that has died by overdosing benzodiazepines combined with alcohol, so I'm quite scared to fully take this route as well, and it's not very nice to feel like that my emotions are in a void somewhere else and can't be reached and at the same time still having these visual distortions, but maybe it's the only hope that's left for me. I sometimes think that all these young people that sadly enough overdose or take their own life, that they probably had HPPD, and just couldn't take it anymore or didn't know what it was. There has to be more resources and money invested into this, as I'm sure that there must be tenthousands of sufferers out there.

 

So I'm unsure if I should take the easy or the hard way out of this one. And do you think that there is any chance for me to recover (as I have quite severe symptoms of HPPD)?

 

Any support or tips from you on how-to-survive would be much appreciated. The symptoms that are by far worst is the light sensitivity and the palinopsia. If you're also suffering from this, have you seen any improvement? I'm even lacking motivation of doing "fun stuff", such as playing video games, watching a movie or playing music, it's that bad. And then it would become really difficult of doing something creative or to get my life back on track again.

 

Thanks everyone,

 

Best Regards,

 

Shadowplay

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Hello,I'm really sorry to hear about all of this. I'm in the same boat with it being newly acquired. Exercise is the only thing that really seems to help, and by help I mean going from pulling my hair out to feeling damn near normal in three days. I've always been very athletic so it wasn't hard for me, but if you are having this hard a time, get a bike and force yourself to ride it for an hour every day. This morning I rode to work in the cold, we will have snow soon,and I'm still gonna ride, I'll just bundle up. It sucks yes, but not as much as the alternative.

Keep in mind I'm only about 3 weeks to a month in. Here's my thread if you want more details:

http://hppdonline.com/index.php?/topic/4132-hi-everyone-i-guess-im-part-of-the-group-now/#entry25816

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hi, as you are only 3 weeks in... I wouldn't be too quick to jump on any meds... See how you body adjusts and heals naturally first with healthy eating, excerise and sobriety. This might be gone in a couple of months, there is no point filling your body full of strong chemicals like Keppra or Sinemet.

 

Try not to stress about the floaters... They are natural, absolutly nothing to do with hppd... You are just noticing them more and more as you check your vision. I can remember having dozens even when I was a kid... Hell, even stewie griffin has them in famliy guy!

 

Just stay completly sober and de-stress as much as possible... Take time off work, college or whatever. This is your window for recovery, use it wisely.

 

Good luck, Jay

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Hi Ozzz and Jay,

 

Thanks for the replies and the story that you attached.

 

I will definitely try to exercise more but it's really difficult as I can't let it go off my mind. It's always there, and these floaters and the extreme light sensitivity is constantly reminding me. I have a large amount of floaters and that's why I'll probably will go through with this eye operation. Hopefully it will be succesful so I atleast got one less problem to think about related to this torment.

 

I tried to have a few beers with my friends but it did only worse the symptoms, so I'm definitely not going for any more of that, I've also stopped with smoking cigarettes and caffeine without any troubles.

 

I just don't simply know what to do with myself and it really feels like the world and my whole life is just passing by as I do nothing about it either, I feel really helpless.

 

I had to quit my job because I couldn't stand the bright enviroment and the light from the screen because it really made my floaters shine and caused heavy anxiety. This was pre-full-blown symptoms.

I tried to study, didn't work either because I can't focus enough and it all feels pointless. I guess that the depression is coming for me already. And the worst thing is, is that I've read about HPPD before I got it, I just never thought that it would be this serious and scary and liferuining if I would be that unlucky guy that eventually got it.

 

I'm really admiring all of you, who's actually coping with it, having a job, studying, working out etc, because all that seems so far from where I am today. I can barely make it through the day. I tried to go to swimming yesterday at a indoor place, and it gave me some relief but the social anxiety isn't fun at all, it felt really awkward. In a few months it'll be a very dark place here in Sweden at 4 P.M already which is a bit of relief. I can't stand the sun anymore. I just hope that the Visual Snow, which is at a moderate level right now won't increase.

 

The worst part of it all is that 2 months ago, I had a great life and I was actually happy with a shared flat with my girlfriend in Spain and had a work that was really smooth with a very sporty and social life.

Right now, I have nothing. I am nothing. Hopefully I'll survive long enough for any improvement, or any kind of light in my life, that will make this worth fighting for.

 

My best wishes to all of you,

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It is easy to read these forums and think no one gets better, but alot of people who do get better don't have time to come and post on here, they are too busy enjoying their life again!

 

Trust me though, ALOT of people recover from this. Try not to worry that your life is now ruined, there is every chance your symptoms will fade over the next few months.

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  • 4 weeks later...

It is easy to read these forums and think no one gets better, but alot of people who do get better don't have time to come and post on here, they are too busy enjoying their life again!

 

Trust me though, ALOT of people recover from this. Try not to worry that your life is now ruined, there is every chance your symptoms will fade over the next few months.

I'm so glad I read this, all the research I've been doing has made it seem that it'll never get better or at least for a very long time. I guess you are right, if you get better why would you continue to post about it.

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  • 2 weeks later...

You are very early in in terms of the disorder and the stage you are at is where most people get better (usually because they are suffering from residual visuals from their trip and not from full blown HPPD). Give it a few months, dont rush into medication. And do not trip again. You know yourself that you are vulnerable to HPPD; some people genetically are. Me being one of them :(. Best of luck

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